This Is MS Multiple Sclerosis Community: Knowledge & Support

Which was more severely constricted, your left or right jugular vein? My left was worst. It seems like in Taiwan they also have worse left jugulars.

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

Gibs--
thanks for this paper. Dr. Chung continues to look at IJV reflux, outside of the CCSVI researchers. He's the doctor responsible for the transient global amnesia studies. The fact that he is correlating jugular reflux to aging might be part of the puzzle as to continued MS progression. And the fact that outflow decreases with age, again might be important.

From what I've learned, the left jugular vein is often smaller than the right in many people. Jeff's left side has closed again, and his collateral is back--but what is different than his pre-angio days is that he has a fully functioning right IJV, rather than one w/80% constriction. So he's still free from MS fatigue and heat intolerance. Maybe for him, one good side is enough?

Further study of left/right prevalence is needed....
Hope you're enjoying your new son, and doing OK,
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Yes.
Dr. Simka says in his not published paper abou right/left this:
"Also, we demonstrated (Fig. 5 and 6) that venous malformations were more often found on the left side. The prevalence of malformed left internal jugular vein was 83% vs. 74% of pathologic right internal jugular veins. Similarly, the blockages were found only in left, and not right, brachiocephalic vein. Currently, it is suspected that CCSVI is a congenital venous malformation. Taking into account embryologic development of these veins, (11) one should expect a higher prevalence of pathologies on the left side, which has actually been found in our study."
Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Good for Jeff. I hope that he continues to be symptom free but the fact that he has renewed constriction doesn't sound good. I wonder if the proximity to the heart has an impact on left jugular reflux/stenosis...?

I'm having such a wonderful time with Arthur, now 10.8 weeks. He is growing rapidly and smiling and laughing lots.
My MS symptoms are much, much better and I can walk down the corridor without stumbling so much, thank goodness. Also the myclonus and bladder are back to their post-stent improvements. I think that there is a strong probability that low blood pressure and the other vascular changes of pregnancy were quite extreme in me which would explain my pregnancy deterioration.
I can't wait till I return to California. But it will be in a couple more years, I expect.

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

Aha! Good info, Erika!

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

This is all exceedingly wonderful news, Alex!

Left, hands down. Got enough flow on the right now to handle 3 of the lefts, makes the Chunnel look small...

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

My left and right were both stenosed...right worse than left. I also had problems with the azygus. My husband had stenosis of the right jugular, not the left. His azygus was his main problem.

Left. Totally. Right and Azygos fine.

I was quite severely stenosed both left and right. Dr. Simka said that he thought the left would need a stent, but they didn't put one in. My azygous seemed okay, but they said something about a bend.

I think that the a stenosis provokes, or precedes another, and another. For instance, I started having problems with CVI in my right leg at about the same time that the never-remitting relapse started in 2009 after a dental anaesthetic. My own, lay feeling is that CCSVI causes most of the "MS" symptoms, in most PwMS but something else is causing the stenoses. Doctors tend to know quite a bit more than I do in their fields, I just muse about such things. I felt brilliant after venoplasty, but things regressed pretty quickly It was not placebo. I don't think that it was the Fraxiparine either, as I felt just a couple of days later that things were closing up again. Maybe the massive doses of pre-procedure blood thinners that took a few days to metabolize? No, it was the stenoses that caused the symptoms. I'll let you know when I go back for another round nest month.

I'm sorry to hear of Jeff's development - but glad to hear that he is asymptomatic. Is it in/at the stent that it is restenosing? Or is it in another area of the vein? Will it be left untreated? Wait and see?

Congratulations to you and Wee Prince Arthur, Gibbledy. I'm just the Da with MS, I can't imagine doing the mother part. I couldn't do it. My hat is off to you.

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My name is not really Johnson. MSed up since 1993

I'm really interested in what everyone is saying. I haven't had a venogram or angioplasty yet, but my MRV and Doppler US showed the opposite of what most of you have found.

The MRV showed my right jugular was small while the left was large. The tech who did the Doppler and the physician who interpreted did not see the results of the MRV. They found right jugular completely blocked, left partially blocked with reflux.

Does the blockage affect which side of the body has more prominent MS symptoms? For those whose blockages are on the left, are your MS symptoms more prominent on the left or on the right?

My MS symptoms are far more prominent on my right side. My neurologist points out to me the left side of the brain controls to right side of the body and uses this to discredit CCSVI and the Doppler results. My family physician has also told me it is normal for the right jugular vein to be smaller than the left.

Like Not Johnson and others, I'm disappointed to hear of Jeff's developments, but glad his symptoms continue to be under control. Great to hear wee Arthur is doing well. Good news is always an uplifter.

So glad to hear that Arthur is doing well! Any age can be fun, but round about three months is wonderful with babies -- you will love this time period.

Left stenosis worse than right for me, both sides stenosed, plus azygous. Right side symptoms worse.

I am sorry to hear of anyone feeling any symptoms and hope that every single thing we do here, every post, every procedure, all of it together will bring us all closer to solving this mystery. I am amazed at how much closer we are than we were a year ago, five years ago -- imagine five years from now! When baby Arthur is ready for school!

From Gray's Anatomy--



Doctors typically do procedures on the right side (measure venous pulse, place catheters, endovascular procedures), since it is usually larger, but there are variants.


link

Thanks for Dr. Simka's information on this, Erika. Seems to be a pattern for many, not all.

Jeff's presenting issues of his first MS flare were on his left side. His left jugular was a thread and his right was also 80% closed when Dr. Dake saw him. The right is now open (like CureIous) and because of the difference, he has tinnitus (a whoosing sound when lying down) and can get postural headaches. We are waiting for further evaluation, because there may be nothing left to do for that left side--short of vein surgery. The vein is scrawny and defers to a larger collateral. BUT he is much better with one good side. He sleeps deeply, dreams again, no urgent bladder, no MS fatigue, he's active and involved in life and work again. He says this has all been worth it, because he is able to enjoy living again...and that was not the case prior to angio.

So glad to hear you're better than during pregnancy, Gibbs...we were all worried. Babies are the best. Now that my kid is six feet tall and shaving, I look back on those days fondly. Precious time.
Bluesky--you're right, we are getting there.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Technically my left was a little worse than my right in terms of stenosis, but not enough to get excited about. Both were pretty bad.

My right was worse than my left. All 3 needed ballooning. My symptoms are mild (but many) and symptoms a little more noticable on the left. Also have pulsatile tinnitis in left ear mostly when laying down. Getting checked next week to see if I have re-stenosed.

Kathy